Alex’s Story: Our Son’s Courageous Battle and Triumph Against Medulloblastoma
If you ask 7-year-old Alex Winters what his favorite sport is, he’ll sum it up in one word: soccer.
As a competitive soccer player, Alex loves everything about the sport. He enjoys kicking the ball, passing the ball, scoring points and winning games with his teammates for their soccer league.
“Soccer has always been a huge part of Alex’s life,” said his parents, Nina and Mark Winters. “But when our son started having debilitating headaches that wouldn’t go away, he had to stop playing soccer for a while, which was difficult for him to do. We wanted Alex to feel better again. It didn’t feel normal for a 7-year-old to have painful headaches where he was missing school and games.”
In July 2021, Nina scheduled an appointment for Alex to see their primary care physician (PCP) for an evaluation. Their PCP told them Alex had migraine headaches. She prescribed Motrin but that didn’t seem to work. For nearly a year, the Winters did everything their doctor told them to do, but Alex’s headaches were getting more frequent and more severe. His headaches made him nauseous.
“In the back of our minds, we thought something else was going on besides headaches.
When Alex’s headaches got worse, we were referred to a pediatric neurologist.”
In September 2022, the Winters took their son to see a pediatric neurologist for the first time.
“After examining Alex, the pediatric neurologist diagnosed him with migraines as well,” said Nina. “But she also suggested we get an MRI to ensure nothing else was going on. We had the MRI done at CHRISTUS Children's in San Antoni because it was closer to where our family lived. Our plan was to follow up with our pediatric neurologist in Austin once our son’s MRI results came back.”
On September 19, Alex underwent a magnetic resonance imaging (MRI) that creates clear images of the organs and tissues in the body to help diagnose diseases. That’s when everything changed.
An unexpected discovery
“The pediatric neurologist in Austin called me up the next day,” said Nina. “I knew by the sound of her voice it was bad news. At that moment, I felt like my whole world came crashing down on me.”
The MRI detected a tumor, the size of a golf ball, in Alex’s brain. He would need immediate surgery to remove the suspicious growth. A biopsy would follow to determine if the tumor was malignant.
“We were devastated and heartbroken,” said Nina. “We didn’t know what to think. It was so hard to process everything at that moment. We ended up having Alex’s brain surgery in San Antonio closer to our home. The pediatric neurologist in Austin referred us to the neurosurgery team at CHRISTUS Children's.”
Within minutes, Nina got a phone call from CHRISTUS Children's. They wanted to see Alex as soon as possible.
When the Winters arrived at the emergency room, they met with Linh Reeves, PA-C, a physician assistant on the neurosurgery team and Dr. Mark Lee, the section chief of pediatric neurosurgery at CHRISTUS Children's, who addressed all their questions and concerns, and prepared them for what to expect during surgery.
“Linh and Dr. Lee went over the results of the MRI in greater detail with us,” said Nina. “Dr. Lee showed us pictures of the tumor and described his plan of action for removing the growth. We also learned Alex had another complication that was directly related to the growing tumor in his brain.”
The MRI results showed Alex had obstructive hydrocephalus, a life-threatening condition in which excess cerebrospinal fluid builds up within the cavities or ventricles of the brain as a result of an obstruction. The tumor in Alex’s brain had blocked the cerebrospinal fluid from draining properly.
“When facing a frightening situation like this for the first time, there are so many questions and so many unknowns that flood your mind all at once,” said Nina. “But Dr. Lee and his team made us feel more comfortable about everything. Dr. Lee explained the benefits and risks of the procedure. He made us feel more at ease going into Alex’s surgery. The only thing we knew was that our son had a tumor – we didn’t know if it was cancerous or benign – but we prayed for the best outcome.”
Preparing for brain surgery
The day of Alex’s surgery was an emotional time for the Winters. While they were hopeful that everything would go well, part of them still felt scared and nervous. Alex was anxious, too.
On September 22, 2022, Dr. Lee and his team performed the three-hour brain surgery. The goal of the surgery was to remove as much of the tumor as possible without damaging nearby healthy tissue, and to reduce the pressure inside the brain caused by the tumor blocking the cerebrospinal fluid.
“We were updated continually while our son was in surgery,” said Nina. “That helped put our minds at ease. We were never left in the dark. When Dr. Lee talked to us after Alex’s surgery, he said he was able to remove the entire tumor from his brain. That’s when I broke down in tears. That was the best possible outcome we could have prayed for. After surgery, Alex spent three days in the PICU. He was sedated, so we did not talk to him until the third day when he started waking up.”
While the brain surgery was a success, Alex was not out of the woods yet.
After the complete tumor resection, the brain tumor was sent to pathology to determine if it was cancerous or benign. When the results came back, the tumor was a malignant medulloblastoma.
Medulloblastoma is a cancerous tumor that starts in the cerebellum (the lower part of the brain) and can spread through cerebrospinal fluid to other areas of the brain and spinal cord. The tumor and buildup of pressure in Alex’s brain were responsible for his painful and recurring headaches.
“Because medulloblastomas are invasive and spread into the surrounding healthy cerebellum, there is always a chance some cancer cells remain after surgery,” said Dr. Lee. “Follow-up chemotherapy and/or radiation are usually part of the post-surgical treatment plan to target any remaining cells.”
From diagnosis to cancer treatment“We were scared,” said Nina. “We had so many questions and concerns racing through our mind.”
How are we going to fight this?
What is the prognosis?
Can the tumor return?
“We started googling our son’s condition,” said Nina. “I stayed up many nights researching about the different ways to treat medulloblastoma. We wanted to do everything we could to help him.”
Once their son’s cancer was confirmed, Nina and Mark met with Dr. Dimarys Sanchez, a pediatric oncologist at CHRISTUS Children's, who referred them to a radiation oncologist in Houston to discuss advanced forms of radiation therapy that are not available in this region. The Winters family decided proton therapy would give Alex the best possible outcome. Proton therapy delivers beams of proton particles to a more exact location than conventional radiation. Proton therapy targets the tumor with minimal impact on nearby healthy tissues.
Alex began his proton therapy treatments in Houston shortly after brain surgery. He completed 30 rounds of proton radiation therapy and six rounds of chemotherapy. Alex recently started maintenance chemotherapy, which will last for nine months.
“Alex is doing fantastic,” said Nina. “Being the strong and brave kid that he is, he pushed through his treatments like a champ. We are incredibly blessed to have a wonderful team of doctors at CHRISTUS Children's. We are grateful to Dr. Lee for removing our son’s tumor, and Dr. Sanchez who continues to check on us to see how Alex is doing. The physicians and nurses at CHRISTUS Children's were amazing. They treated Alex well and gave him the best care possible. Our son has definitely been a trooper in all this.”
While this journey was not easy for the Winters, they said their faith, the support from their family and community, and staying positive even when it was tough, helped them stay strong for Alex.
“As hard as it is, you have to stay positive,” said Nina. “Keep your faith and know there are people out there – family, friends and even complete strangers – who will support you every step of the way.”
For more information about our pediatric neurosurgery program at CHRISTUS Children's, visit our website at: https://www.christushealth.org/get-care/services-specialties/neurology
Our neurological care team is equipped to evaluate and treat a full range of common and complex neurological conditions. At CHRISTUS Children's, we are renowned for our expertise in treating even the rarest neurological disorders.